This Policy Roundtable, organised by the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (ESPKU), was hosted by MEPs Deirdre Clune (Ireland, EPP) and Nessa Childers (Ireland, S&D).
The EU legal framework for medicines for human use is intended to ensure a high level of public health protection and to promote the functioning of the internal market, and includes measures that encourage innovation.
The Romanian Foundation for Lysosomal Diseases (FRBL), founded in 1998 in Cluj-Napoca, has marked 20 years since its inception.
Patient-centered research tool to increase knowledge on immune system (dys)function among CDG children and adults - The Immunology and CDG Questionnaire (ImmunoCDGQ) for Patients & Caregivers.
Effective ways of Investing in Health, the Expert Panel will maintain a Hearing on the application of the ERN model in European cross-border healthcare cooperation outside the rare diseases area.
As a PhD student in this project you will be part of a highly international team of young researchers. You will have your individual research project at your host organisation, focusing on your discipline of interest. To complement your specialised training, you will do internships at a complementary PoLiMeR partner organization.
Polimer consortium aims to set a landmark in the present European Higher Education Area as the first research training initiative in personalised ‘Systems Medicine’.
RD-Connect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. Together with the ERN EURO-NMD, RD-Connect is organising a series of webinars aiming to train ERN members at all levels. The webinars will let you learn how the RD-Connect tools can help you in your everyday work.
Informative materials, where you will find out what we've achieved in the first year, what the plans are for the second year, and to gather some information about the ERN and MetabERN?
As the European Commission (EC) has already notified, the Andalusian Agency for Healthcare Quality (ACSA) has been selected as an Independent Assessment Body (IAB) to perform the technical assessment of a sample of ERN members’